Sunday, May 12, 2013

Big decisions with a hard pill to swallow

It has been a whirl wind since we got home from Cincinnati. We have
spent a lot of time discussing the best plan for this upcoming surgery in
terms of travel plans, investigating lodging options, booking flights, discussing the best option for Reid, and
how to keep P as healthy as possible post surgery. I had no idea how much time this would all take. You know you have spent A LOT of time on the phone when you have to charge your cell twice in one day by 5pm. Thankful most of it is planned! Preston currently has a
bad cold (i am sure he caught something on the plane or while at the
hospital this past week) and the idea of flying back and forth each week
for 4-6 weeks post surgery for procedures that will need to be done is
not in his best interest to keep him heathly. Plus it will cost us a
fortune. We also have no idea when and how often we will need to come
back. The Ronald McDonald House has a waiting list unfortunately so we
have arranged temporary lodging till we get in. I have a new found
appreciation for hospital social workers and the resources they provide.
The woman helping us at CCH is WONDERFUL! Hopefully it won't take long
to get in to RMHouse but once we leave, we have to go back on a waiting
list. Not good!:( As much as we don't want to do this, we have
officially decided to stay in Cincinnati for 4-6weeks (could be longer
but not sure till we get there). We plan to arrive a day before the
surgery and stay till we are officially released and Preston won't need
to go back to the O.R. for another bronch for several months. This
surgery will be 5 hours, risky and complicated and we don't want to
expose him to anything that could cause his airway to collapse or hinder
the healing process in anyway. We have also made the decision to keep
Reid here with our family members and nanny. This part of the journey is
a really hard pill for me to swallow. The thought of being away from
home that long is bad enough but then to be away from Reid that long
seems unbearable. I know it is for the best to get Preston trach free
and finally have a non-damaged airway but it still stinks. The boys are
going to miss each other like crazy too! We met a family from Manhattan
while in Cincinnati and their twins were in the same boat as
ours......she said as soon as their family came to visit with the twin
brother who was left at home, the disposition totally changed in their
twin who had surgery. She said it was the best decision they made having
him visit! That is my hope for the boys! My in-laws are going to bring Reid out for a visit hopefully!
Thank goodness for skype too! My parents have already picked their dates
to come visit us which will be wonderful! Thank God for our family and
circle of support we have in our dear friends! I have already been asked
if we will have an address to send us care packages. Really? Talk about
feeling humbled. We are blessed! When I think back to a year ago at this time, I can't believe the boys were only 6 months old and Preston was so frail. We were dealing with eating issues and using his g-tube. Just to get out of the house was so complicated. Today we enjoyed a gorgeous walk before heading out to brunch with my family for Mother's Day and then played all afternoon outside. It would have been such a ray of hope a year ago to know in just 1 short year he would be having airway surgery for decannulation and life finally felt 'normal' for us! We were thinking it would be 3 years before all of this. He eats like a horse and we can't wait to pull the g-tube after surgery is all over. He is our easier child by far in so many ways. Funny how things work out! I have so much to be thankful for this Mother's Day! I am cherishing every single second at HOME knowing we will be gone most of the summer. I am cherishing every single second with Reid.....even the stubborn and ornery times. I will miss them! And I am really looking forward to the alone time with Preston (and Tim) once we get settled in our home away from home since I will always feel like I need to make up for so much missed time in the beginning months with him. We are living in the moment for sure!!!